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Inner Fire: Your Will To Live
Ernest H. Rosenbaum, MD, Isadora R. Rosenbaum, MA, and David Spiegel, MD
Medical oncologists have always been fascinated by the power of the will to live. What makes a person faced with a life-threatening crisis fight to live? How do people cope with chronic disease or refuse to let physical discomfort keep them from enjoying their family, friends, and outside interests? We feel that the answer to questions such as these has to do with the will to live. In trying to find how certain people were able to overcome such obstacles, we began asking them about their will to live. What promoted their ability to cope under the stress of disease and get so much out of life, no matter what the circumstances?
We discovered a commonality of factors among both those who live with acute and chronic disease and health care professionals in good health. These factors include: hope, faith, attitude, determination, the love of life, courage, luck and chance, the ability to cope, a support system, having a purpose (or goals), and appropriate medical care. We consider the integration of these common factors to be the keystone for the will to live.
Our research began with the premise that, through telling stories of how people cope with illness or various life crises, we could better understand the process and then help to implement what we learned in our patients' lives.
Our goal was to help others, but, in the summer of 1995, we became direct beneficiaries of this research. It was at this time that Ernest acquired a rare medical syndrome, Chlamydia type II double pneumonia, and had an acute heart attack. He was on a respirator for ten days and would have died were it not for the excellence of his intensive care medical team and the love of family and friends. Not only were his own values, reaffirmed, but also he learned much more about his own will to live and about the power of the human spirit.
This book deals not only with people who have faced or are facing cancer or other serious illnesses, but also those around them - physician, care givers, and family members - who have experienced first hand or through observation some of the critical ingredients of the will to live. We believe that when you read the experiences of the people, written in their own words, you will agree that we all have untapped potential for emotional and spiritual strength that enables us to endure.
We go through many stages as we deal with illness: fear, frustration, depression, and helplessness. We may eventually find ourselves drained by illness and inactivity, tired of feeling victimized by events beyond our control. We cannot endure such emotional upheaval indefinitely. At this point, an acceptance of reality begins to emerge along with thoughts of how to work around problems and recapture something of value in life. We consciously or unconsciously make a decision for life.
Many of the people in this book made that decision. Each of the journeys is unique, but several life-affirming themes continually resurface. It is clear that they have a message of importance for all of us.
Their stories lead us to reassess our own values and goals. In presenting you with the ways in which others have coped, we are not advocating a drastic change in your own way of life. We only want to suggest that, even if you have a life-threatening disease, you can make choices and compromises, as you did before you were ill, and in this way live with your problems. We hope you then will increase your efforts to keep fighting.
We really know very little about this mysterious force, the will to live. It seems more potent in people who are connected to others than it is in those without strong bonds. It also seems to involve a willingness to fight and struggle through whatever the difficulties and pains of life may be.
We hope to be able to find something in those people who have a strong will to live that can be taught to those who seem to lack it. Perhaps the best we can do at this point is to share the stories and struggles of some of our patients, friends, and colleagues to reassure others that they are not alone, that their fears are justified, that hope always exists, and that attitude can make all the difference in the world.
If the contributors of this book were to give one piece of advice to those who have encountered adversity in their lives, it would be: It's up to you. You can learn to live with it, live around it, or live in spite of it. You don't know what you can do until you try.
Ernest H. Rosenbaum, MD
and Isadora R. Rosenbaum, MA
Plato said that courage is knowing when to be afraid. Within this book are stories of courageous people, who became very ill or faced some other crisis, yet counted--and count--themselves fortunate. In the face of a dismal diagnosis or harsh circumstances, they took stock of their resources and found strength and love.
Many people faced sickness but were not overtaken by it. Just because one part of them became ill, they did not give up. Their bodies may have suffered, but their spirits remained strong.
Indeed, serious illness is a reminder that we are not immortal. Those who respond creatively to a life-threatening illness hear it as a wake-up call, a reminder of how time is short and life is precious. They do what matters most while they can, experience the joys of living and loving, and let the people around them know how much they are loved and appreciated. They trivialize the trivial, drop useless commitments, eliminate relationships that are taxing and not worth the trouble and just say no to doing things they think they should do rather than what they want to do.
The people in this book talk about and illustrate the will to live in a realistic and meaningful way. They do not demonstrate some artificial determination to prolong life no matter what. They assess life's resources, goals and values. They take stock and see how fortunate they are to have people who care about them and whom they care about. Mind may not triumph over matter, but mind does matter.
Years ago, a clever graduate student taking a statistics course was wandering through a cemetery and realized there were two types of data on the headstones: birth dates and death dates. She wondered if they bore any relationship to each other. Theoretically, they shouldn't. When you die, you die--period. That was not what she found. People tended to die after their birthdays, not before. The difference was not large, usually several weeks, but was significant. People seem to hang on until after their birthdays or some other special event. This doesn't mean you can make yourself live indefinitely through mental calisthenics, but rather that meaning makes a difference in the course of disease.
Another crucial theme running through this book is the power of social connection: no man or woman is an island. Prisoners of war on Bataan kept themselves alive through giving one another lectures, playing together, caring for one another.
In my own field of research, we have found that women with breast cancer help one another enormously through support groups in which they can vent their darkest fears and learn how deeply they can still care about each other. To feel part of a network of caring at a time of serious illness is deeply reassuring. The will to live is not the denial of death. Rather, it is the intensification of life experience which comes when you realize how finite life is.
The spirit of the contributors to this book is well captured by Carol Buck's chapter title: I Don't Have Time Not to Live. Many people think awareness of a serious prognosis means the loss of hope. It does not. The real issue is: hope for what? These people used their illness or the illness of someone in their family as an occasion to redefine what matters in life, to distill the nectar, and then drink fully of it. Ruth Smith the tough old bird, found that in giving she got even more: "I forgot my weariness." And Laura Evans discovered in her expedition up Aconcagua how climbing a mountain is like living with breast cancer: you face your deepest fear, death; you learn the value of team support; you take one step at a time; and you clarify your ultimate values.
There is good advice in this book: be willing to make compromises, find the joy in life, find good support groups, be partners with your doctors. Cancer patient stories make it clear that we are not simply happy or sad and that pleasure is not simply the absence of pain. Illness teaches us that we can be both happy and sad and that even the threat of progressive disease and death can provide a context in which life can be sweeter. One woman with advanced breast cancer once said to me, "All my life I had wanted to go to the summer opera in Santa Fe. This year I went. I brought my cancer with me and it sat in the seat next to me. I loved it."
This book is replete with the joy of life, of people who face trying circumstances yet go about living their lives. It is inspiring reading for the temporarily healthy as well as the ill.
David Spiegel, MD
Professor of Psychiatry, Stanford University, School of Medicine
We wish to give special thanks and recognition to our editors: Faye Volk; Paul Volk; Mary Heldman; Laura Rosenbaum; Lillian Snyder; Glenda Derman; Chana Lotan, MD; Susan Clayman; Jackie Lowenberg; Sabrina Selim; and Stephanie Holt; for their thoughtful reviews which helped shape the concepts in this book to make it clear, concise, and more understandable.
We wish to thank Paula Chung, Diane McElhiney, and Michael Glover for their tireless efforts, support, and creative talents that helped to produce this book.
© by Ernest H. Rosenbaum, MD
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